Here are some questions I have recently been asked on various message boards about what its like raising a child with Down syndrome.
1. With your daughter what challenges do you face?
She is our first child, and I believe that helps that I don't have an older child to "compare" her to. Sure, I see her developing at her own pace compared to "typical" (the PC term for children without syndromes or other exceptionalities), but that is par for the course with us. Cameran does things at her own pace, so patience is key. But we celebrate like there's no tomorrow when she hits a milestone because they are that much more special.
We have been fortunate (overall) with Cameran's health. A main concern is that of various heart defects, all with varying degrees of severity. Cameran has what is called a small (barely measurable) PFO, and is monitored once a year. She has not had heart surgery, which sometimes is necessary. Although we avoided heart issues, Cameran did develop seizures around a year. She was treated vigorously for about three months, and has been seizure-free since, and also is medication free. Cameran sees various other specialists, including an Ear, Nose, and Throat Dr for recurrent ear infections (pretty typical), she sees a pediatric opthamologist and has a pretty cute pair of glasses that we wear occasionally for a bit of far-sightedness.
Any child with a developmental disability, whether physical, chromosomal, or other, is entitled to early intervention services. We are fortunate to live in Pennsylvania where they are 100% covered. This has never been an issue for us. Her physical therapist, occupational therapist, developmental therapist (helps with social skills and play imitation) come to our home or to Cameran's daycare. And yes, Cameran is in a regular daycare setting with typical children.
Are these challenges? I suppose to some. We just do them because it's what you do. Most communities have active Ds associations. Cameran has a playpals group that meets once a month for arts and crafts, singing, and snack. It's also a great chance for parents to get together and talk. Buddy Walks are great too.
Put it this way, most geneticists (yes we went to one after Cameran's diagnosis and we are fortunate to live 40 minutes away from Hershey Medical Center) will tell you that once a mother has a pregnancy (whether she gives birth or terminates is irrelevant) where Trisomy 21 or any other Trisomy is present, her odds statistically speaking automatically rise to 1:100 unless her age advances the odds to even greater. So I was 27 when I was pregnant with Cami. Then my odds (depending on where you get your info) were roughly 1:1100. I chose no testing, ultrasounds picked up nothing, and Cameran wound up being the "1" in that 1100. Did that stop us from getting pregnant again knowing that now our odds are 1:100? No. I am due September 9th. I suppose everything is simply a matter of perspective.
2. How has having a child with special needs affected your family's lives?
Well, I have no clue how it will affect our little girl who has yet to come. I do know that all of the families I know, both in real life and in the bloggy world, who have multiple children and one has Ds are happy and do very typical things. Some have an oldest child with Ds, others a middle child, and some the youngest. I don't really think about how it has impacted my family's life because we just do it. This is our life, and we are living it to the fullest. I know that there is a higher incidence rate of divorce for couples who have children with disabilities, and that it is important to still take time for one another, just as you would having any child with or without special needs. I also know that we have an awesome support system of family and friends. My husband's family lives out of state, but my parents are about 40 minutes away. It also helps that we are both in education. My husband is a guidance counselor and I teach language arts. Both of us have had special education training.
Personally, survival to me means not looking too far into the future, because that is when I tend to get overwhelmed with the "what ifs", much like mommies-to-be are doing when they are fretting about the "what ifs" for their unborn babies. I do know that it is not fair to "expect" this new baby of ours to "take care" of Cameran once we are gone. We are in the process of setting up a living will, and it all goes back to the wonderful support network we have in place. Looking back, hubby and I were in shock after the diagnosis, wallowed for 2 weeks or so, and then realized that life is too short to feel sorry that we did not "get" the baby we expected. We prayed, we talked, we got our sh*# together, and moved to the place of acceptance where Cameran is not Down syndrome; Cameran has Down syndrome. It does not define her entire being, it is one facet of her make-up. We (and others) can choose only to see the T21, or to see Cameran, as a whole unique individual.
You will hear a lot about "people first" language in ANY special needs community. Some people are fanatical about it, some just go with the flow. I am more the latter, but will impress the point without trying to come across like a bi%#@ ;) Case in point: my friends don't come up to me and say "How's Cameran's Down syndrome?" or "Jen, yeah she's the mom with Down's kid..." Cameran is a person with Down syndrome, she is not a "Down syndrome kid". Also, in the United States, it is "Down syndrome". No "s", and lowercase "s" in syndrome. Not a big deal, just a tidbit.
3. Is there a financial burden involved with having a child with special needs?
I always joke that Cameran's Ds diagnosis has actually saved us money. Despite the fact that she has umpteen doctor's appointments, a child with a diagnosis such as Down syndrome will receive supplementary insurance (Medicaid), or for a family who does not otherwise have insurance or has insurance that is not very good (for lack of a better term) Medicaid will serve as the primary. For example, we have Highmark BlueShield. It is ALWAYS listed first. Hubby and I have a $20 copay. Cameran is on this insurance. Without having Ds, Cameran would also have a $20 copay per office visit. Coupled with Medicaid (We use United Healthcare, formerly Unison), we pay ZILCH as long as her Dr is in-network. The only Dr. we have a copay for is her Ear/Nose/Throat Doc because we CHOOSE to go out of network bc the ones in network are not that great. Cameran had pneumonia in early March, went to the ER, and was admitted for 2 nights. Paid nothing.
I by no means am trying to glorify this, but between early intervention services and Medicaid, there is truly no financial burden for us. The only thing I purchase extra, and at this point, BY CHOICE, is Pediasure, to ensure she is getting extra calories and nutrients 'cause girlfriend is a long and lean toothpick. Does that mean all families are this lucky? Probably not, but I am simply speaking from our experience here in Pennsylvania.
4. Has having a child with Down syndrome caused any relationship issues?
As I mentioned before, the hubster and I were in shock for a few weeks after Cameran's birth. We have amazing friends and family who were our rocks during this time. We have regular sitters (both family and friends) who watch Cameran so we get alone time. There is nothing that Cameran can't do that a typical child can, it just. takes. longer.
By nature we want to "fix" things so we can continue with our status quo, whatever that may be. There are no certainties in life. Car accidents, tornadoes, plane crashes, etc., are all out of our control. We all want a perfect baby. I wanted a perfect baby. Cameran is a perfect baby, but in a different way. Any of us, Down syndrome or not, could go on to have our child be diagnosed with autism, which now has reached, according to Autismspeaks.org, the alarming diagnosis rate of 1:110. We can't do anything to stop that rate from climbing. Sure, depending on beliefs we can stagger vaccinations, or drop them all together if we are in the camp that vaccines are the cause (sidenote-I don't buy into that and it has been debunked but that is a whole other can 'o worms and a debate that isn't my cup 'o tea). I guess my point is, we can't take ANY test to predict whether or not our child will develop autism, yet we aren't afraid to get pregnant.
Moving on, here are some quick resources to use while you are making the right decision for you and your family...
Here is a website that is very user-friendly and accurate--
www.ndss.org (This is the National Down syndrome Society)
The specific portion "about down syndrome" is a link that very objectively goes through some statistics, health concerns, and common myths associated with Ds. Also, the link to "My Great Story", shares stories from families and individuals with Down syndrome that covers various aspects of life.
My absolute favorite blog to follow is www.kellehampton.com.
Kelle coincidentally just attended the NDSS luncheon in NYC this past Wednesday and her most current blog post goes into candid detail about this event. She has links to the Birth Story of her daughter, Nella Cordelia, that chronicles her path to finding peace with Nella's postnatal diagnosis.
This link shares an article by Melissa Riggio, a young adult with Down syndrome. http://kids.nationalgeographic.com/kids/stories/peopleplaces/downsyndrome/
Finally, here is a clip from this week's NDSS luncheon, featuring Kelle Hampton speaking about the birth of her daughter and her family's postnatal diagnosis.